Here is a response to some of the comments in my last post in Q&A format. (Some of the comments come from responses to my comment to other’s posts arguing against genetic screening for DS. )The questions are classified by two categories – the morality of abortion as such, and the morality of “eugenics.”

Abortion:

“You are pretty emphatic that a fetus is not a baby. Why?”

The essential issue here is whether a fetus has the rights of a human being. My answer is no for two reasons:

Pro-lifers confuse the potential with the actual. An actual human being is a physically distinct being who survives by the use of reason. (Yes, babies are helpless after birth, but their very existence does not impose an obligation on the mother –other are capable of taking care of them.)

There is no right to be a parasite. The fetus is essentially a parasite because its very existence imposes an obligation on the mother. A fetus has no more “right” to live of the mother than a thief has to live on others wealth.

“[You make] the common mistake of thinking that the unborn are not human persons because they are so small… Does your personhood derive from your size? Is Arnold Schwarzenegger more of a person than Gary Coleman?”

No, the essential issue here is metaphysical independence.

“[Don’t] infants with trisomy deserve to live just like any other infant does?”

Yes, once they are born. Prior to that, they are to human beings what an apple seed is to an apple tree, or an egg is to a chicken. Most people don’t claim that eggs are chickens – why do they make the same error with a fetus?

“Under current law, protected life begins at viability. Is that a bad idea?”

Actually, since Roe vs. Wade, it mostly does not. To the extent that it is protected, the law is wrong.

Eugenics is a vague term. If we view it as selective breeding on an individual level, then every parent advocates and practices it, since we all choose partners with certain genetic traits (a particular appearance or personality) rather than practice completely indiscriminate sex. If we define birth control as eugenics, then everyone also practices that also, since we choose when to have sex even when we don’t use technological aids. If we define it as the selection of particular combinations of genes, rather than the selection of the partner from whom those genes will come, in the form of genetic and prenatal screening, then I advocate that too, when feasible.

A different definition of eugenics is that which is practiced on a social level, as the voluntary or coercive selection of prevention of certain human genes from being expressed. I, like most people, advocate that only in a very limited basis, that being inbreeding between siblings and the cloning of human beings using current technology.

As it applies to Down syndrome, my belief that choosing to have children with DS is immoral is actually the opposite of eugenics. DS severely retards fertility, so having kids with DS does not increase its incidence as a hereditary trait. On the other hand, having less kids with DS does make room for those parents to have more normal kids with dormant DS genes, so it may actually increase the incidence of DS.

“Down syndrome is not a disease. It is not an illness… We all have our special needs, don’t we?”

Actually, it’s universally recognized as a genetic disorder. “Disorder” means a condition which is unhealthy or detrimental to life as a human being. The specific problems related to DS are “cognitive impairment, congenital heart disease, hearing deficits, short stature, thyroid disorders, and Alzheimer’s disease. Other less common serious illnesses include leukemia, immune deficiencies, and epilepsy..and “an average lifespan of 49 years.” This is qualitatively worse than the medical problems the average person encounters. For example, I have a genetic tendency for hypertension, which I counter with regular exercise. This is very different from a disorder which severely impairs most functions of everyday life.

“Just because a child is born with DS, [does that] mean that they are unhealthy or going to suffer for the rest of their lives?”

Not for their entire life. If someone were really going to endure constant suffering for the rest of their life, then I would suggest that they commit suicide. (Not murder, as some comments imply.) However DS does significantly affect the overall quality of life relative to a healthy personal. Some of the reasons for this are mentioned in my response above. If you still doubt this, then I would ask – how valuable would a cure for DS be to you if you or someone you loved has DS? Only someone who embraces human suffering could turn such an offer down.
One analogy to the quality of life of a DS person is wealth. Money does not guarantee happiness, but extreme poverty is an impediment to it by limiting our opportunity to pursue things that make us happy.

Do you advocate “playing God?”

Yes, in the sense that humans should strive to transform their environment and themselves in the image of their values.

“If there was a test for expecting mothers that predicts the IQ of their baby, every mother should have it done?”

If there was a test for mental retardation, then yes. If I could easily have a smarter child, then sure. Since abortions are expensive (not just financially), I only advocate them in cases where the child’s standard of life would be significantly impaired.

“If you don’t like the test results, [are] you going to keep on aborting the pregnancy until you’re happy[?]”

If I were a woman, and with the disclaimer above, yes.

“Good luck finding a woman that will do that for you.”

Thanks, I did.

“As the Bible says, the wisdom of man is foolishness to God. Those who think that they are so clever and know so much about medicine and science are like children to God, the creator of the universe.”

22 Responses to Follow up on my Down syndrome post

Well put and you are entitled to your opinion, as we all are. I still feel my Son has every right to respect, understanding & acceptance as all people do, no matter what race, creed or religion they are. Yes, my Son has a trach and a gtube, but both are unrelated to Ds and if he would have been born ” typical” he still would have been born with this condition. My Son is not very sick nor does he need or get 24/7 care. My Son has no heart problem, he is healthy except for his TEF. Would I choose Ds for my Son, NO. Would I change him if I could, NO!

Thank you for your well thought out responses but you have NO IDEA what you are talking about.

This is evidenced by your statement “On the other hand, having less kids with DS does make room for those parents to have more normal kids with dormant DS genes, so it may actually increase the incidence of DS”

Down Syndrome is rarely caused by a dormant gene. There is only one type of down syndrome that ‘can’ be inherited and it is a very rare type.

Most Down Syndrome is caused by a type of accident in cell division at the time of conception.
It is unknown what causes this to occur, even after years of research.

I can tell you also that you obviously have never had a relationship of any kind with people with disabilities, especially down syndrome, or you would realize that they are NOT suffering.

Yes, some people with Down Syndrome are also born with other health issues but as the other responder noted, they are generally NOT associated with Down Syndrome. Most of the medical conditions associated with Down Syndrome are treatable and even curable. My own daughter had 3 holes in her heart, but never even had to have heart surgery. She had surgery to correct an umbilical hernia but it was not caused by Down Syndrome, it was physician error!

Also there are far more heart defects present at birth in children without Down Syndrome. Do you advocate doing fetal echocardiogram on every pregnancy to eliminate the suffering of these children as well?

I do not believe that chidren with Down Syndrome suffer any more or less than a typical child born with some other type of medical condition or really any more than any typical child.

My daughter is a perfect example of that lack of suffering. While fully included in a first grade classroom, she is the most popular kid in school. She has no qualms about being different and in fact will proudly state, “I may have Down Syndrome but I CAN do it!”

It is people like you, who are uninformed and generally lack a complete understanding of anything in life except what fits into your little brain and precise little mold of what you think life should be, that continue to perpetuate hatred and discrimination in this world.

There are far worse things that can happen to one in life than having a child with Down Syndrome.

You sir will one day experience this. With the type of people you surround yourself with I doubt anyone will be around to advocate for you when you need it as there will be no need to advocate for your poor suffering soul.

As I suspected you ignored my comments and focused on Pro-Life vs Pro Choice as I suspected you would. This whole issue with you has absolutely nothing to do with Down syndrome but all about your athiest beliefs.

I am fine with your beliefs and support you 100% in those and am more then willing to defend you on those.

What caused the flurry was you going around posting all over the place slamming all parents with blogs talking about the new testing. That is the problem I have with you and that most of your facts are wrong.

Just like many you throw the people under the tires of the truck that you think can’t or won’t fight back……

Anyway….hope your working on that living will so you are consistant in your beliefs…

Just a question, but have you ever had a conversation with a person with down syndrome? Just a intellectual conversation. I mean, some of the things they say might just go over your head, but really all you can do is try and understand…

I’ve been watching your blog with interest as I am one of the mothers quoted in the NYT.

I believe you SHOULD have a choice to parent or not parent a child with Ds. The crux of the article however, was not the proliferation of individuals with Ds. But rather the manner in which that Dx is presented to potential parents coupled with a hard look at societal norms.

If a Doctor presents such a diagnosis with incorrect and often times overtly negative information. Then is it actually a choice??

From where I sit, it is only a real choice when pregnant couples are given factual information. Both the good and the bad.

It IS a fact that some people with Ds go to college, some marry. I would even venture to say that MOST live very fulfilling lives.

Do some have additional medical challenges, yep that’s a fact too.

But really, it is a bit disturbing that anyone might think they are in a position to judge the quality of someone’s life, looking in from the outside.

From where I sit, it is YOU who would rather not be bothered/saddled/whatever raising a child with Ds. Which is a statement on YOUR life. NOT the life of the potential child.

If that life is not for you, so be it.

But please don’t twist it and make it into a statement about parents/people living a very good life, a life including an individual with Ds. And make insinuations about evil-doing parents…..

That, frankly, is more than a bit offensive to even the most “rational mind”.

“Disorder” means a condition which is unhealthy or detrimental to life as a human being. The specific problems related to DS are “cognitive impairment, congenital heart disease, hearing deficits, short stature, thyroid disorders, and Alzheimer’s disease. Other less common serious illnesses include leukemia, immune deficiencies, and epilepsy..and “an average lifespan of 49 years.”

Cognitive impairment…my child tests in the low normal IQ range. Yes, LOW normal. To you, that may still not be good enough to allow her life, but if you are going to toss her out for it, at least be consistent and toss out everyone else with LOW normal IQ. Know anything about IQ testing and verbal ability? To be blunt, my daughter’s High IQ for DS” is very likely less about her INTELLIGENCE and FAR more about her verbal ability. She can talk more than some people with DS, for some reason she got lucky in that department, and she CAN give answers that satisfy a verbally-based test. Make that test non-verbal and give it to kids with DS, and you may find a whole lot of them testing in the normal range. What does that tell you? Well, it tells me that it is the TESTING that is less than perfect, not the child. And if we are going to throw out all the people with auditory processing disorders, speech impediments, etc, then your pile of throwaways is getting bigger.

Congenital heart disease….well, gee, you got me here. My child did have 2 holes in her heart at birth. She has never had to have surgery, the holes closed up on their own. One of the holes was a PDA, we are all born with those. It is just a matter of how long it takes to close. As in many other aspects of DS, the PDA closes more slowly than it normally does. By the way, she is cleared from Cardiology, and her heart is perfectly normal now. God is like that. 😉

Hearing deficits…well, due to the structure of the facial bones, there is less room for drainage in these cute little faces. Meaning ears do get infected sometimes, which can lead to hearing loss. In fact, my daughter has had 3 sets of tubes. A travesty, in your eyes, I am sure. But her big sister had SEVEN sets, and she is genetically perfect. She was even our State’s Little Miss at one time. Does her beautiful face and perfect genes give her a bye on the ears? I personally like to think of her as an individual and see her as at least as complicated and “difficult” to raise as my youngest. To be very honest, it is this eldest child who has most tested me, smart but not very productive. She has one hell of a social life, a great job, a terrific brain, and a pretty face. Her grades, however, are pretty horrendous. We are working on that. Shall we dump her, too, as she is not reaching her full potential yet? Don’t mind me if I choose to keep her, because I know that eventually she will mature and be all she was meant to be.

Short stature…well, again. My daughter is actually VERY tall. I am 5’7″ and she already reaches my shoulder at 8. As someone above said, she is already taller than Gary Coleman, the actor. We better toss him out too. Did you know Mother Teresa was a very diminutive woman, sizewise? Dr. Ruth and Mary Lou Retton come to mind too. Barbara Boxer…you know her, right? is only 4’11”. Jada Pinkett Smith is TINY, and powerful. Well, you get my point. Short doesn’t mean a damn thing. But, because you mentioned it, my daughter is NOT short. You have made an assumption about worthiness based on a physical feature. What’s next, penis size?

Thyroid disorder…um, nope.

AD…well, who the heck knows? Do you have a lock on NOT having AD? My grandpa wandered out of a nursing home because of AD dementia, we found his body a week later. My MIL is currently completely incapacitated in a home with AD. She was short, too. Beautiful, vibrant, vivacious, hardest working woman, and the best cook i have EVER known. AD is a vicious disease, and we should ALL fear it. Interestingly, it is VERY likely that the cure for AD will lie in the genes of those with T21. In effect, it is the BODIES of dead fetuses that offer the most hope for that cure. AD and T21 ride the same chromosome. Score one for you. But hey pal? Keep your dirty little hands off my MIL, k?

Leukemia…nope

Immune disorders….nope.

Epilepsy…nope.

Lifespan….your facts are wrong here. Check them. And uh, while we are at this discussion, you might want to double check your life insurance. Cause NONE of us know when we will die. Not a one of us. Give me a life full of loving and kindness, joy and introspection, over whatever it is that…you…have. Anyday of the week.

If you did you would not be talking like this, my daugther is 3 years old and is a very healthy child.

I am very pleased tath she is my daugther and happy! I do not mind her disability, only when I meet people like you is when I remeber It ,not because she has downsyndrome but because she is a human being just like you and me.

Oh wait are you human?

Wath if you would of been born with a disability?

I wont even ask if you had a child with a Disability wath would you do because your little letter is self explanatory.

maybe all you need is to meet our children and see tath their lifes are worth as much as mine and your’s

you make a mistake by concluding that all children born with d.s will suffer. many children will be born to loving parents that will provide a network of support for all that child’s needs. they will go the extra mile to help that child learn and stay on target with their peers. my daughter has d.s that wasn’t detected when i was pregnant (which shows how accurate the testing is) and her only delays are in speech. the speech dealy is more related to her autistic tendency and not the d.s. she has perfect physical health, she is of normal size for her age, she gets along well with her peers, she develops meaningful relationships with her family and friends. even in her academics she stays on grade level with other eight year old children.

d.s is a spectrum disorder and its effects can be mild to severe. no two kids with d.s are alike, just like no two kids without it are alike.

while i do agree that you have a few valid arguments, i must suggest that you do some more research on the subject. don’t just copy and paste a generic list from webmd.com and assume it will apply to every case.

i would also advice that you not put too much faith in your outsider opinion. in order to have an opinion that matters is must be an educated one. it must come after some experience with the topic itself.

well, I don’t agree with some of the parents wanting to take away the choice of parents to abort their pregnancy if ds is detected, I think its there choice but changing the stereotypes of DS would be better. For example, I didn’t learn till recently that a kid at my sister’s highschool has ds and he never stepped foot in special ed. Went to prom, has a job, dated, and attended the same curriculum as others. Sure he’s not going to be a lawyer but he doesn’t care. He is actually luckier than most, knowing what actually matters in life. My son will ride four wheelers and snow mobiles, he’ll live on his own, I can hope he’ll marry, he’ll have a job, and he’ll be happy. He has no serious complications. In fact, his biggest complication is people thinking he is less of a person or will have less of a life than anyone else. Would I cure it if possible? Yes. Would I abort a future child with ds? No. Though I don’t think our happiness or our support should outweigh personal choices. But I do think that those parent’s heart is in the right place, people should be educated on the reality of ds, just not told what to do with that information.

He is one of your favorite authors you listed in your bio. You see, he was also an advocate for the disabled. For you my friend, ignorance must be bliss.
It’s a shame you have to waste your otherwise healthy 42 chromosomes on idle prattle.

I hope judgement day is fun for people like you. Children….all children are blessings God gives us…we dont pick and choose which gifts to accept and which to throw back in His face. I would accept a child with Down Syndrome with no regrets. They are born knowing the value of true unconditional love and from what I’ve seen, they hold the knowledge and have better judgement of character then anyone I’ve ever seen without DS. Some may suffer but I doubt they’d suffer any worse then thsoe who suffer from having to be raised by parents like you.

Have you considered that it’s a slippery slope? What if genetics advances to the point where you can pick and choose looks and very specific skills, for example? Don’t you think certain skills would be picked more often based on fads and diversity would be undermined? Do you think people would be better than nature at determining viability long term?

Long term, it’s clear eugenics is not only wrong, but could easily lead to the extinction of the species.

Also, because someone has characteristics that are defined as “disorder” doesn’t mean they are less than human. That’s exactly what you are implying – that people with DS are more expendable than people without DS.

If there were a way to make my son’s life easier I would take it. But that doesn’t mean that I don’t love and respect him, regardless of his being born with Down syndrome. I didn’t expect it. Didn’t want it for him. But at age 2 (healthy and joyous and clever in many ways) he is HAPPY. We are working to help him learn and progress and grow.

We are working to help make the world a better place for him and all of us by pushing back against narrow-minded, frightened and therefore frightening, little people like you. Life is a gift and a miracle. I don’t pretend to understand it all. How dare you pretend that? Like I said, I would change things for my son. But I’d rather him have Down syndrome than lack a compassionate heart. Clinging to your pseudo intellect must be so lonely sometimes!

I’m a very liberal person but, this is down right wrong. I have a sister with down syndrome and I love her more than anything in this world. People with down syndrome are one of the best people you’ll ever meet. My sister has shown me so much and what there is to appreciate in this world. when you say by concluding that all children born with d.s will suffer is a lie. Many children will be born to loving parents like mine. You have no say in this because you don’t know what it is really like to grow up with a sibling with down syndrome. Or even know what the whole experience is. I would NEVER take anything back that’s ever happened. It is people like you, who are uninformed and generally lack a complete understanding of anything in life. Life is more than what you see in that small nut head brain of yours.